Wednesday, October 30, 2013
Every Fall the National Hospice and Palliative CareOrganization releases the Hospice
Facts and Figures report, just in time for National Hospice and
Palliative Care Month. The format overall is relatively the same with some
minor differences. Overall, the same
trends we have seen over the past few years have kept going in the same
direction with the same velocity:- Increased # of patients served* (1.5M)
- Increasing average length of service (71.8d)
- Decreased median length of service (18.7d)
- Slightly higher percentage of elderly patients served
- Higher diversity of patients served
- Increasing percentage of non-cancer diagnosis led by debility and dementia
- Increasing number of hospice programs (5,500)
- Increasing percentage of for-profit hospice programs
- Increase in Inpatient Hospice (GIP) days
- Declining satisfaction rates (although still high)
I find this to be a very helpful guide to understanding end
of life care in the United States and have shared and discussed it in IDG and
with organizational leadership. It
serves as a helpful benchmark for a hospice program (in addition to the annual PEPPER
reports) compared to national standards. It is also extremely helpful for
presentations as you always want to make sure you are using the most up to date
statistics on hospice care. How do you
use the NHPCO Facts and Figures?
I always thought it would be good to have a nice public spreadsheet with all the data from the past NHPCO Facts and Figures. (Although the report is copyrighted which we respect, it seems like a good crowdsourcing or Open Data project.) To save you from having to search for past PDFs I have listed all the ones I am familiar with here. Download them before the links are broken! (If anyone has them from
earlier please send them to me or add the link in the comments)
- 2013 http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf
- 2012 http://www.nhpco.org/sites/default/files/public/Statistics_Research/2012_Facts_Figures.pdf
- 2011 http://www.nhpco.org/sites/default/files/public/Statistics_Research/2011_Facts_Figures.pdf
- 2010 http://www.stjosephhospice.com/wp-content/uploads/2011/01/Hospice_Facts_Figures_Oct-2010.pdf
- 2009 http://ebookbrowsee.net/nhpco-facts-and-figures-pdf-d146287250
- 2008 http://www.lovinghandshospice.com/pdf/nhpco_facts-and-figures.pdf
- 2007 http://web.archive.org/web/20081001182409/http://www.nhpco.org/files/public/Statistics_Research/NHPCO_facts-and-figures_Nov2007.pdf
- 2006 Summary http://www.allhealth.org/briefingmaterials/NHPCO-NHPCOsFactsandFigures-2005Findings-760.pdf
- 2006 State Supplement http://www.hpcai.org/documents/filelibrary/documents/pdf/NHPCO_NDS_2006_State_Report_FINAL.pdf
Wednesday, October 30, 2013
Thursday, October 24, 2013
I had just begun reading Dr. Danielle Ofri's latest book, "What Doctors Feel: How Emotions Affect the Practice of Medicine", when I opened The New England Journal of Medicine to find David Korones' essay "What would you do if it were your kid?" As he points out, nearly all of us have been asked, have heard this "plea to share with them, as a partner, the heavy burden of decision making." And nearly all of us have squirmed in our seats a little each time.
I still remember the child in the ICU, sedated and on a ventilator as her parents waited for the fungus in her lungs to clear. The note on her door said, “Docs, if ‘Plan A’ didn’t work, the alphabet has 25 more letters! So stay cool.” Yet, the infection was persistent, and her parents were asked to decide – continue as is, perform surgery to remove the fungal ball, or to withdraw the ventilator support and keep her comfortable as she died. The whole team gathered with the parents – the ICU doc, the BMT primary, the infectious disease specialist, the cardiothoracic surgeon, and me, the palliative care doc. The options were presented. The table fell silent as the parents processed the decision before them. Then the father asked, “What would you do?” And after a few furtive glances, one-by-one every provider around that table shared their opinion.
There was not a unanimous response from the providers at the table. But everyone sat with the parents as they faced a heart-wrenching decision. Two years after her death, her parents sat before a group of second year residents and reflected on that family meeting, and on the empathy they felt. It buoys them on their waves of grief to this day.
While the word "empathy" does not appear in Korones’ essay, I think it is at the heart of everything he says. Perhaps it is because I was reading Ofri’s book, and on page 48 she explains,
“Empathy is a cognition, a thought process that allows you to understand the patient’s feelings while not necessarily feeling them yourself… and the empathic doctor needs to be able to clearly communicate that understanding” (p48).When a patient or a family member asks, “What would you do?”, they are inviting empathy.
1. Korones DN (2013). What would you do if it were your kid? The New England Journal of Medicine, 369 (14), 1291-3 PMID: 24088090
2. Meyer EC, Lamiani G, Foer MR, Truog RD (2012). "What would you do if this were your child?": practitioners' responses during enacted conversations in the United States. Pediatric Critical Care Medicine 13 (6) PMID: 23034458
Thursday, October 24, 2013
Friday, October 11, 2013
In the last few months, a few people have done a lot to help open my eyes to the importance of understanding palliative care through the eyes of the world. The efforts of Dr. Jim Cleary (@jfclearywisc) on Twitter (#hpmglobal) and leading the Pain and Policy Studies Group, in addition to Dr. Holly Yang (@hollyby) and Dr. Frank Ferris and their international work, have helped illuminate the challenges faced in other countries who are not as open when it comes to opioid access, or palliative care training.
So for World Hospice and Palliative Care Day tomorrow I encourage you to increase your awareness about global palliative care issues the whole year through. But since awareness is real only the first step, I would also ask that you sign The Prague Charter in an effort to make governments recognize palliative care as a human right. It is already sponsored by:
Background information on the charter can be found on the European Association for Palliative Care website. Basically it asks government to support access to medications, palliative care training, public health policies that support patient and families in times of serious illness and around death, and finally integration of palliative care into the healthcare system continuum.
Once you sign it, share it and when you share it, write why it is important to you. Here is what I added to my signature on The Prague Charter:
As a palliative care doctor, I have seen suffering damage people and families, but I have also seen the ability for skilled clinicians taught the basics of palliative care, who are able to relieve that suffering. In that act of relief, those clinicians also create a healing process for patients and families even in the face of serious illness. With access to critical pain and symptom medications and the proper education more clinicians can make a true difference in people's lives around the world.
Friday, October 11, 2013
Friday, October 4, 2013
In the face of a crisis, many people are challenged to find constructive and meaningful ways to engage in conversation and so often they fall back on platitudes. Simple, hopeful, semi-philosophical phrases we have heard in many other situations may sound important to the speaker, but the receiver finds them meaningless and tone deaf. I'm sure you have heard many of these uttered to patients by well-meaning family friends, and even health care professionals:
"This too shall pass."
"Stay strong."
"Think positively."
"I'm sure it will be OK."
"It is what it is."
"God won't give you more than you can handle."
Many in that list are generic, perhaps based off of some quasi-scientific research that a good attitude means you can beat your colon cancer. But the last one is particularly interesting because it calls upon spiritual beliefs, which can be a strong source of support for the critically ill. I have heard a few chaplains who understand the origin and context of this phrase, criticize the crude application in times of sickness. I also have worked with chaplains who utilize this phrase to explore and discuss a patient's own religious values. When I hear it in a clinical context, I'm not sure I have explored the deeper meaning, so I was very interested to read this frank rebuttal of "God won't give you more than you can handle" by Pastor Nate Pyle.
"Limp, anemic sentiments will not stand in the face of a world that is not as it should be."Pyle explains that this phrase is often sourced to the Bible but the original statement is about temptation not suffering. I think this is a great post to bring to team and discuss how we as professionals who see the intersection of suffering and spirituality everyday deal with statements like this. I posted the article earlier this week to the Pallimed Facebook page, and it garnered a lot of responses. Here is one that I think many in palliative care will agree with:
Call it what you will, but someone people hang on to this for their hope and sanity. Even though I agree with this blog, even his blatant use of calling it what it is, sometimes to "correct" those (in the moment) who are holding on to this falsity as their hope and sanity, it is equivalent to pulling the chair out from under them.When you hear, "God doesn't give you more than you can handle," how do you respond?
H/T to Rick Bauer (@nvrflycoach) for posting the original blog to Twitter
Photo Credit: Not attributable after using Tin Eye Reverse Image Search
Friday, October 4, 2013
Tuesday, September 24, 2013
“What words can be uttered? Your turn just slightly and
there it is: the death of your child. It is part symbol, part devil, and in
your blind spot all along, until, if you are unlucky, it is completely upon
you. Then it is a fierce little country abducting you; it holds you squarely
inside itself like a cellar room – the best boundaries of you are the
boundaries of it.” – Shirley Jackson, from “People Like That Are the Only
People Here,” in Birds of America*
* * *
“Doctor, you might have children just like anybody else.
Would you want somebody to give you false hope or tell you, ‘OK, your child is
gonna be fine,’ and you know she’s not?” - Parent feedback (Meert et al)
* * *
“Barriers to resuscitation status discussions were ranked
according to the percentage of physicians and nurses who identified the issues
as often or always a barrier. The top 3 barriers were unrealistic parent
expectations (39.1%), lack of parent readiness to have the discussions (38.8%),
and differences between clinician and patient/parent understanding of the
prognosis (30.4%).” - Sanderson et al.
* * *
I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection
of short stories Birds of America* as
a college freshman. At that time, nary had a thought entered my mind about a
career in medicine, and I read the book during my coursework to obtain that
ever so useful creative writing degree. The story was used again in a course I
took later in college, and, again after I changed paths and went into medical
school. It just kept showing up, and I kept reading it. The strange thing was,
though, that I would forget I had read it until a few sentences in, when I
would start to think, “Huh, this sounds very familiar…”
I’m sure that the 18 year old version of me who read the
story took something from it far different that any of the other versions of me
who have read it. As it is now, being a mom as well as a physician, I find it
almost impossible to get through because it is too real and too scary. Although
“fiction,” it is a scene that happens every day, in which moms like me, with
kids like mine, and doctors like me, with patients like mine, find themselves
abducted by that “little country.”
So when I sat down to write about Amy Sanderson and
colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I
had read something before that would tie in with this study. It was another
case of “Huh, this sounds familiar…” I knew there was another angle to this, so
I dug through my file folders until I can to the one that said “Parental
Perspectives” and another one labeled “Provider Perspectives.”
Both are very full of articles with frayed edges; and in
these folders, a dichotomy.
In one folder, articles filled with attempts at identifying
the needs of parents by culling through their experiences. Common themes present themselves: losing a
child is incredibly difficult – whether that child was a 17 week fetus or a 17
year old football star; there are no ways to be prepared for the loss of a
child; honest and straightforward information and compassionate communication
from doctors and nurses is helpful and necessary. In short, parents what to
know what is going on, and they want to be able to have the information, even
when there is prognostic uncertainty, so that they can be active participants
in the care of and decision making for their children.
In the other folder, articles filled with identifying how
pediatric care providers handle communication during times of critical and/or
terminal illness. These pieces consistently find similar issues with communication
between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers
that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these
communication skills, a lack of training in these skills, and a concern about
prognostic uncertainty in pediatric patients’ disease processes as key
barriers.
There is another common barrier theme that arises from the
studies of the providers, though. It is one that, in light of what we see from
parent surveys and studies in which parents are almost begging for more
information, may surprise you.
Pediatricians give, as one of the most common reasons for
NOT engaging in goals of care, end of life, or code status conversations a “lack
of parental readiness” or “lack of parental acceptance.” There are worries
about “unrealistic parent expectations,” as well as “clinician concern about taking
away hope.” When I read these reasons, and also think about the combined lack
of education and training, as well as lack of confidence, it makes sense how
these crucial conversations become avoided. If you don’t feel like you know
what you are doing, you are afraid of messing it up, and also afraid of
upsetting or having conflict with parents, then pausing to ask “what are we
doing and why? And is this the right approach or your child?” takes a backseat
to the pressing issues of the vent and the drips and the day to day medical
management. Just because it is an understandable position doesn’t make it
right.
As a parent is
quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all
questions. Give all information—parents can handle it. What we cannot handle is
not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.
What they found is disconcerting. Although about 2/3 of
those surveyed -- physicians as well as nurses-- stated that “a DNR order
indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR
order to be the threshold for the limitation
of treatments not specifically related to resuscitation.” Finally, about 6%
of those surveyed “believed that a DNR order implies that only comfort measures
are to be provided.”
Let that sit for a moment.
I’m sure most of us have had the experience of being called
on a patient and hearing something that begins, “Well, she’s a DNR, but I went
ahead and checked her vitals anyway and she has a fever of 102.” The
implication of that phrasing, or variants of such phrasing, are that since the
patient “is” a DNR (it’s a new species, look it up) that routine evaluation and
management of non-cardiac arrest scenarios is to be discontinued. I cringe when
I hear this call, and cringe more reading the misguided implications of the DNR
order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was
found in Sanderson’s study, perceived to affect care beyond response to
cardiopulmonary arrest.
How does this happen? How does a DNR order become a signal
of “comfort care only?” Or lead to an assumption that it might include “limitation
or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the
discomfort that pediatric providers have with communication near the end of
life, but also their desire to protect their patients from what might be seen
as a futile intervention, a conversation about a DNR order might be a proxy for
a “bigger” conversation. It becomes a sort of substituted goals of care
conversation, in which decisions are made and judgments potentially assumed,
but in which that critical element of mutual understanding between all parties involved
remains lacking.
There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but
it is slow to gain steam in training curriculum already tightly packed to fit
into three years. And this does little to address the needs of practicing
pediatric providers, doubly frightening since they are the ones training the
future providers. It is a need that, no matter how far we advance in the world
of medicine, is going to remain. Sad as it is, difficult as it is, unfair and
tragic as it is: children are going to die. These children and their families
deserve care providers who can as deftly handle end of life care as they do
handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something
medically horrible befalling one of my children is almost too much to bear. The
idea that I might be left in the dark about his condition or prognosis and not
have the information I need to make the best decisions for my child and our
family is another layer of suffering I don’t think I could tolerate. When the
unthinkable happens and a parent is kidnapped into that “cellar room” that
Lorrie Moore described, she needs to
hear voices from the outside telling her what is going on throughout her time
in the cellar, not just when it is about to be flooded or set ablaze. And
though no one can truly get into that cellar room with her, they can open
windows into it, hold a hand through it and promise not to let go.
For those providers who don’t feel they can do it, there are
providers out there who can and will. There are those of us passionate about
pediatric palliative care here to guide and support our professional colleagues
just as much as we are here for the patients and the families. We know that sometimes the providers feel
like they are in their own cellar room, and we care about our professional
colleagues as well as patients and families. We can’t help you if you don’t let
us, though, and even though it can be hard to ask for help, consider the
alternative. Consider the patient and her family. Consider that perhaps after
having a palliative care provider there with you a couple of times, you will be
able to feel confident and comfortable enough to handle the next one on your
own. And then maybe teach others how to do the same…just like an invasive
procedure in which you “see one, do one, teach one,” the end of life or
advanced care planning or code status conversation(s) are skills that need to
be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from
their palliative care colleagues, though. For those of you adult palliative
care providers out there, don’t think you can weasel your way out of this: you
are needed as well, and yes, you CAN handle working with young patients. Just as pediatricians shouldn’t opt out and
say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to
say, “But I’m an adult palliative
care provider, I don’t do kids.” We’ve
all got to pitch in here.
Really and truly, you can do it. And if you run into a
question or a problem along the way, guess what, the pediatric palliative care
community is pretty small, and we are generally very nice, and we LOVE to help our colleagues. You can
email us (I’m pallcareriegel@gmail.com
or eriegel@kumc.edu) or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC. I’m missing other routes and organizations
here, so if any one reading this wants to add to the comments, please do. Basically,
we want to shout “Help us help you!” Sanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224
Other cited works:
Beach,
M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50,
2057-2061. (Open Access PDF)
Longden,
J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3),
131-139.
Meert,
K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1),
2-7. (Open Access PDF)
Meyer,
E. C. (2006). Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics,
117(3), 649-657. (Open Access PDF)
Durall,
A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditions. Pediatrics, 129(4), e975-e982 (Open Access PDF)
Photo credits:
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal
Child: Emily Riegel
*Links are Amazon Affiliate Links. Any proceeds from sales using these links support Pallimed outreach efforts.
Photo credits:
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal
Child: Emily Riegel
*Links are Amazon Affiliate Links. Any proceeds from sales using these links support Pallimed outreach efforts.
Tuesday, September 24, 2013
Friday, September 20, 2013
Patients attending an ambulatory consulting service in Adelaide, Australia were queried regarding their feelings about stopping medications, and the results were reported in JAGS recently. The subjects, age 71 on average, were taking an average of ten medications. Most subjects thought they were taking a "large number" of medications and 92% said they'd be willing to stop one or more medication "if possible."
Big shocker for Pallimed readers, I'm sure. Who wants to take ten medications?
This survey included a geriatrics population and was published in a geriatrics journal. But if you practice palliative care or see patients with limited prognoses, you should take heart in the notion of slashing medication lists, especially when you can see no clear indication for the medications. I'm looking at you, primary and secondary preventative medications.
A few hypotheses for why it's so difficult for some physicians to discontinue medications:
- Inertia: It's easier to continue with the status quo.
- It may require a discussion about overall prognosis: "Wait a second, doc. My doctors have been telling me for years to take that orange pill. Are you sure it's OK to stop now?" In other words, patients want to do the right thing, even if that means being burdened with taking a boatload of meds. This is evidenced in the JAGS study by the fact that 71% of patients said they'd accept taking more medications, if necessary. However, if a prognostic discussion has occurred (e.g. related to advanced cancer, etc), it's then easier to say "I think that medication has done it's job, I admire your commitment to taking it, and now it's OK to give it a rest."
- Overestimation of actual benefit of medications: "He had an NSTEMI five years ago. What if we stop the simvastatin and he has another MI? Sure, he's probably going to die from lung cancer in the next several months, but I don't want him to die from an MI. No, he's not having any coronary artery disease symptoms now, but I think it's best just to continue it." Look at a meta-analysis of several studies evaluating the benefit of statins for primary and secondary prevention of cardiovascular events. The number needed to treat to prevent one major coronary event was 28, which isn't horrible. Yet it's not exactly dooming your patient to angina/MI before he dies, especially if you consider that the five studies evaluated in the meta-analysis followed patients for 5-6 years to look for the outcomes.
Use a shared decision-making approach with patients. Even though it's OK to discontinue meds, it's also OK to not be dogmatic about it if the patient prefers to continue the med (as long as it's not harming them).
As hard as it is to stay on top of the deluge of new research (just even in your own specialty), it also never hurts to remain aware of research regarding the indications for primary/secondary prevention. A good example would be a recent cohort study from the Annals of Internal Medicine which suggests the optimal BP in patients with chronic kidney disease may be 130 to 159/70 to 89 mm Hg, with patients in that group having lower mortality rates.
If you're reading this, you're probably part of the choir already. If so, here's a pat on the back to you for being vigalant about polypharmacy!
For more related to this topic, see my post from a few years ago about "Minimally Disruptive Medicine" (and some other related links in that post).
Edit 9/22/2013: Also, I just found some recent American data published in Journal of Palliative Medicine on statin use near the end of life in patients with cancer (along with a letter to the editor on the JPM study). Bottom line: Statin use common in this population right up until time of death, unclear how appropriate the use is in each individual patient, but opportunities to deprescribe were likely missed.
Friday, September 20, 2013
Thursday, September 12, 2013
JAMA Internal Medicine (JIM, you'll always be Archives of Internal Medicine to me) has published a study of an outcome prediction tool for in-hospital cardiac arrest. Specifically, a tool to predict the rates of neurologically intact survival after an in-hospital arrest. The developers of the tool call it GO-FAR (Good Outcome Following Attempted Resuscitation).
One could imagine ways of re-titling it FORe-GO, if one chose to spend one's time imagine such things.
This is the best tool of its kind that I've seen, although one needs to be very clear about what it's actually predicting.
The paper mostly describes, in detail, the derivation and validation of the tool. I won't belabor this - they did a good job of it, used a large dataset, created a model, tested and validated it to get the best receiver operator curve, etc. The data come from the massive, US-based, 'Get With the Guidelines Registry' (which used to be called the National Registry of Cardiopulmonary Resuscitation). The GWGR collects standardized data on in-hospital cardiac arrests from 366 hospitals in the US (all types and regions of hospitals) (the national rate of CPR survival to discharge of 18% which most of us are aware of comes from the GWGR). The GO-FAR data come from arrests between 2007-2009 (51,000 patients).
Worth belaboring, because this is critically important in understanding if one chooses to use this as a tool to help patients understand CPR outcomes, is how they defined a good outcome: a Cerebral Performance Category (CPC) of 1. CPC of 1 means:
"The patient is conscious, alert, and able to work but might have mild neurologic or psychological deficits (such as mild dysphagia or minor cranial nerve abnormalities). Patients with a CPC score of 2 have moderate cerebral disability and are able to live independently and work in a sheltered environment. Disabilities may include hemiplegia, seizures, ataxia, dysphagia, or permanent memory or mental changes. Patients with CPC scores of 3 through 5 progress through severe cerebral disability, coma or vegetative state, and finally brain death."This is important because while I'll venture to claim that nearly everyone would agree CPC scores of 3-5 are dismal outcomes, I think there could be a substantial number of people for whom a CPC of 2 would be acceptable. Not welcomed, not a 'good outcome' (which is, granted, what the researchers here are trying to predict), but better than death for some. So to be clear, the GO-FAR tool predicts rates of survival to hospital discharge with a CPC of 1, every other outcome from a CPC of 2 to death are lumped together as bad outcomes.
GO-FAR is being explicitly developed to help inform discussions at the time of hospital admission, so they deliberately excluded patient/CPR characteristics which predict outcomes but wouldn't be available necessarily to the admitting clinician (such as initial rhythm after arrest, site of arrest as someone may be admitted to the floor then transferred to the ICU prior to arresting). The characteristics which survived their analysis and were included in the final index are below. They very nicely also mentioned what the overall survival to discharge with good outcome was in all of these categories (remember, this is not overall survival, this is survival with a CPC of 1). The overall survival with good outcome rate for the entire dataset (all-comers) is 10%.
- Neurologically intact/minimal deficits at time of admission - CPC of 1 (this predicted a better outcome; everything else here predicted worse outcome) (18%)
- Major trauma (reason for admission) (6%)
- Acute stroke (reason for admission) (3.7%)
- Metastatic solid tumor or any hematologic malignancy (5.2%)
- Septicemia (basically they mean active bacteremia here; not the sepsis syndrome) (3.6%)
- Medical non-cardiac diagnosis (reason for admission; ie, patients admitted with cardiac conditions did better) (5.6%)
- Hepatic insufficiency (bilirubin greater than 2mg/dl or AST more than 2 times the upper limit of normal) (4.4%)
- Admitted from a skilled nursing facility (3.2%)
- Hypotension or hypoperfusion (5.9%)
- Renal insufficiency (creatinine over 2mg/dl) or dialysis (6.4%)
- Pneumonia (5.2%)
- Age over 70; the older the worse the outcome (10.2% 70-74 down to 4.5% for over 85 years).
Basically these categories are assigned points, and depending on your score, GO-FAR assigns you a percentage rate of a likely outcome (e.g, 'dismal' less than 1%; 'terrible' 1-3%; 'average' 3-15%; or 'above average greater than 15%). The receiver-operator curve for the final model was 0.78 which is good.
The authors point out that one of their worries with this prediction tool is that it is most likely to, if anything, overestimate good outcomes because all the data come from patients for whom CPR was actually attempted (e.g., patients who had DNR orders who were probably sicker as a group than the full code patients are not reflected in these data, by definition, since they didn't have resuscitative attempts.)
The authors note they are making an on-line GO-FAR calculator, but it's not yet available (the paper's only been e-published and one wonders if they are trying to get it done in time for the print publication).
The tool is clearly being created as a clinical tool for patient education, particularly at the time of hospitalization. Clearly, if one chooses to use this, it's important to know that it's aimed at answering the question "What are my chances of coming out pretty much normal?" (not what are the chances of mere survival, which are probably very roughly double the 'good outcome' rates). I obviously need to see the calculator, but can imagine using it to inform my discussions with patients.
In working with residents, I frequently sense a lot of angst about not feeling facile with CPR outcome data, and what I have historically told them (without getting much sense that they've found this helpful) is that the national survival rates are 18%, about half are neurologically intact; and the patients for whom you personally worry about, think a DNR order is medically indicated because such an intervention is so unlikely to help - the good outcome rates are much worse. The GO-FAR tool is likely going to be a big step in clarifying just how much worse those outcomes are. Perhaps the residents will have less angst with this than my imprecise (but accurate, dammit) hand-waving.
Which brings me to the accompanying editorial, which is one of the best things I've read all year, and has very little to do with the GO-FAR paper itself.
Essentially it is a plea for two (interrelated) things.
One, is that we in medicine, hospitals, etc. need to stop treating CPR as something special (i.e., as a default action, as something that is a genuine medical option 'even when its therapeutic potential is remote.') It's basically the only thing in medicine we treat this way, like its a sort of human right, as opposed to a complicated medical-procedural intervention with indications and contraindications, good reasons to do it, and good reasons not to. Ie, a patient having a cardiac arrest is not the sole indication for attempting CPR.
The second recommendation is that, in this context, hospitals start looking at CPR attempts from a QI standpoint beyond the technical aspects (time to initiate compressions, how closely the attempt followed guidelines, etc). Important stuff, but inadequate. The editoralist argues quality assurance committees must start looking at questions of whether there was an indication for CPR in the first place, if not, why was it offered/why didn't the patient have a DNR order, why weren't people discussing this with the patient/family, etc.
Is anyone aware of QI committees looking at these aspects of resuscitation efforts in their hospitals?
Thursday, September 12, 2013
Monday, September 9, 2013
Here is the simple version:
If you prescribe long acting opioids then
you (and all your prescribing co-workers) should sign up for the FREE FDA/DEA mandated REMS training hosted by AAHPM on September 10th (yes, tomorrow!) andOctober 11th.
Here
is the (semi-)long version:
The FDA and DEA have noticed the public
health risk caused by long acting opioids being used inappropriately. One part of their remedy is to increase training
for prescribers of opioids. The AAHPM
along with 9 other interdisciplinary organizations (Collaborative on REMS Education CO*RE) are
working to provide the educational activity.
This training takes place over two days: September 10th and October 8th.
If you are worried that you cannot make these dates for training,
you can always look for more live and online training resources from the CO*RE website under Educational
Opportunities.
If anyone has taken a CO*RE class we would love to hear
feedback. It will be interesting to see
how this does (or does not?) affect the growing challenge of misappropriation
and misuse of opioids, which are a powerful and important therapeutic class of
medications for hospice and palliative care clinicians to have available.
Don’t forget to register and tell your peers who prescribe,
otherwise you might be the only REMS certified prescriber in town, and I don’t
think you want to imagine that future.
Monday, September 9, 2013
-------------------------
Dear Colleagues,
We at Four Seasons and Duke University are asking for your voluntary participation in a research study questionnaire on work stresses and burnout. Similar to studies conducted in other fields like internal medicine and oncology, we aim to aggregate the responses of several palliative medicine and hospice colleagues in this IRB-approved survey to understand what our colleagues are experiencing in daily practice. These aggregated results will be used to comment on the state of burnout in our discipline currently and inform future strategies to prevent and address this.
There are 29 questions in this web-based confidential survey. We anticipate this short survey will take less than 15 minutes of your time. By completing this survey, you are consenting to participate in this study. No identifying information will be collected or reported. At the end of the survey, you may answer an optional question to provide your email address and indicate an interest in being contacted in the future for more in-depth thoughts on burnout in our field. Other than contributing to our field's knowledge in this area, there are no other benefits to participation.
We anticipate to publish the aggregated findings. The link to the survey is at: http://bit.ly/HPMburnout
Thank you for your time. We look forward to receiving your responses.
Janet Bull MD FAAHPM
Arif Kamal, MD, AAHPM Research SIG Chair
Amy Abernethy, MD FAAHPM, AAHPM President
The research, funded by a government grant, began long before the article was published. Our team began thinking about and writing the proposal for funding in the fall of 2008. It was submitted to the National Institutes of Health (NIH) six months later, where it was reviewed by experts. These people were skilled scientists with a wide variety of knowledge and experience. They returned our proposal to us with recommendations for improvement; research proposals are rarely funded the first time without changes. NIH accepts proposals on three dates each year, so we revised and resubmitted our proposal at the next possible opportunity. It was reviewed positively in February 2010. At NIH, reviewers give proposals scores – and this time our proposal’s score was good enough to be funded! We were finally awarded funding (that is, given the money!) in July 2010. By that fall we began gathering the data. Finally, two years later (Fall 2012) we had sufficient data and findings to write our paper. FIVE YEARS from the initial proposal requesting funding to data collection to data analysis to paper writing to publication.
It is gratifying to know that peer-reviewed research has scientific credibility, but the real test is whether or not it makes a difference in the lives of patients and families. For example, our study has considerable more value if it gets into the hands of hospice staff, the ones who, on a daily basis, can help caregivers manage the pain of their dying loved ones. But many hospice staff never read medical journals, and are often unable to attend conferences, another place where the results of studies like ours are presented. In short, research findings need to translate to the bedside. Years of hard work to produce information that can improve practice deserve attention. As scholars who produce research findings and health care professionals who read them, we have a responsibility to share important results to those who can implement them.
This post was written by Debra Parker Oliver with contributions from The Caregiving Network Research Team (Elaine Wittenberg Lyles, Karla Washington, Robin Kruse and George Demiris)
Photo Credits: Unknown
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